If you've been reading any of my posts, you know we've been doing quite well on Aricept, Namenda and MCT oil but this morning about 4:00 AM, my DH had a mild heart attack. They admitted him so they could observe. After lunch today he had another heart attack that wasn't so mild. In fact, he was in trememdous pain and sweating profusely. He wound up having angi-plasty with 3 stints put in.
He is in CCU now and is SO confused. I read your comments about hospital stays so I was afraid of what would happen. He keeps asking over, and over and over why he's in the hospital, what's this thing in my nose and what are all these tubes for, and why can't we go home. Sometimes he thinks he is somewhere else. How do I handle this and will it be any better after he's back home? I hope this is not a fast track backward.
I came home to freshen up and dry a run of clothes before they mildew, but the doctor gave permission for me to stay with him in CCU. If he doesn't sleep some tonight, I will be crazy by tomorrow. Thanks for any advice or encouragement. Love you all.
oh Dazed, so sorry! yes hospitals set them back quite a bit but he may do find once back home. just try to keep him medicated enough to stay calm and not try to pull out tubes etc. he needs rest not excitement as well as yourself. its hell sleeping in hospital rooms. i hope things go smoothly for you both and hes better soon.! take care and know we will be thinking of you both. Divvi
Dazed, my DH was 81 when he had hip replacement surgery. I'd say he took five steps backward while recovering from the anesthesia...but only got three steps better. The was some noticible change, but when you are with them all the time, it's hard to tell at the time. The main thing is that his mobility was severely affected. We had physical therapists work with him, but he couldn't remember what he was told to do...so, I don't know that it helped him very much.
I remember that he continually insisted I be with him. Day/night and I was there almost all the time, even though the hospital ordered a CNA to sit in the room with him and the insurance paid for all of her fees there. A month later, he coudl not remember that I was at the hospital (or that HE was in the hospital). Those 3 hour naps when I'd rush home for a shower - change of clothes and return ... could have been much longer. When he came home, I had private nurses, and didn't sleep then at all! (The nurses would call me to help when he was still fighting and sundowning at night.) The next time, I'll leave at 7 and return at 9or 10 in the morning. They won't remember! As hard as it sounds,... that's what I have to do. He was in bed sleeping and resting....I was sitting up or walking around all the time.
I am so sorry to hear of this. My prayers for your husbands comfort and healing. Also for you to have strength through this. Hospital environments are quite disorenting, and (though not 100% of the time) typically there is residual confusion for a while after discharge. Again, I'm very sorry this is happening, and I wish you both the best possible outcomes.
I am taking my dh to the therapy room for us to use the machines ourself. I have to help him with each machine because he can't seem to remember what to do although he does watch the time for 5 minutes to quit. They had him using stretchy bands. I lead him there and he can't wind it on his wrist without assistance and if I don't stand beside him and remind him, he just quits. Not getting much exercise done myself but if I can keep him going it is still worth it.
My husband had two heart attackes before the official diagnosis of AD. They put three stents in. The only "anesthesia" he had with the stents was a numbing agent that they put in his groin before they did the catherization and inserted the stents. He was in the hospital three or four days. They told him that after a day at home, that he could do anything he wanted. Open heart surgery, they said, was too risky. He still has the LAD in back of his heart completely blocked. He understood what was going on, so that wasn't a problem. He has to take blood thinners, cholestrol lowering meds - even tho it wasn't up - and also BP lowering meds and his BP was fine before. I guess they want to be sure that those areas are well controlled. He bleeds very freely and there is always some blood in the house and car. Good luck.
If they just numbed the groin area, he won't have the same anesthesia reaction (which was horrible) that one has with full blown surgical anesthesia. I would never want that again. NOT EVER!
My DH woke up today in a panic, when I said to him, do you know who I am, he said, of course, you're mom.... I am not his mom. S--t happens all the time to all of us, even when they are doing well. My heart goes out to you at theis terrivle time.
The hospital is just a trigger for their confusion particualrly when something on THEM is out of sorts!! I sure feel for you. Be sure and ask EARLY each day for a cot if tyou havent gotten one so at least you can stretch out straight!! Those chairs are impossible to sleep in! Hope he gets to go home soon.
Dazed, I am so sorry that you and your dh are going through this rough spot. Hopefully, he won't be to disoriented, but anesthesia does put them into a tail spin. I can only say that my dh did poorly after hip replacement surgery. Take care. My prayers are with you....M
Dear Dazed, My DH had a serious hospitalization in late Oct. He spent 11 days in intensive care .His behavior there was terrible. Pulling out IVs trying to get out of bed and sundowning. I had never seen him quite like that before. He definetley lost something over those 26 days but he improved greatly after comming home. He will never be back to what he was before but take heart that he will get better when he is back to familiar surroundings and routines. His nurse called one night to let me know she had to put him in restraints and she apologized for it. I told her to do whatever was necessary to keep him safe and allow her to do her job. Allow yourself the luxury of rest as he probably won't remember how much you're there anyway. You'll need your strength when he comes home. You and your LO are in my thoughts. Please keep posting so we know how your both doing. cs
Dazed I've been with my husband through three surgeries. The post op confusion can only be handled with medication. There is no way he will remember what is going on. Keep him safe. Get the rest you need-he won't know if you've been there or not. Hopefully things will be better once he comes home.
Dazed - I haven't been through what you are going throu but you are in my prayers. It must be difficult. Are there other friends or family members that can take shifts at the hospital to make sure someone is there with him?
I stayed some with my Mom but it just wore me out. I didn't try to stay all the time. At one time I bought one of those canvas like umbrella/like camp chairs that had a foot rest attached and took it in so I could rest better.
Dear Dazed: I, too, stayed in hospital w/DH 24/7 during surgery recovery. It was one of the most difficult things I ever did on this mad journey. Fortunately our son came by to relieve me a few hours each day. I know you've heard it a million times already, but once again, please do whatever you can to help yourself stay well. I know they are empty words so hard to follow, but having been there, I really do understand. Now, take care.
A stay in the hospital can be very disorienting for an AD patient, but according to the studies I've read, there are plenty of things you can do to help minimize any impact on your husband.
It is VERY good for you to stay with him, and answer his questions, and make him feel safe and loved. If you need to take a break, it would be best if you could arrange for someone to be with him as much of the time while you're gone as possible. Some hospitals can arrange for sitters to stay with the AD patient at times when family members can't be there.
Make sure that the hospital room is well lit and that curtains are open during the day, to help your husband maintain a sense of time and a regular schedule of sleeping at night and staying awake during the day.
To help him go to sleep at night, give him a warm drink (milk or herbal tea), play relaxation tapes or music, and give him a back massage at bedtime. Do your best to get the hospital staff to make adjustments to his schedule to allow him to sleep (e.g., reschedule medications and procedures).
If your husband needs eyeglasses or hearing aids, be sure he wears them so he can see and/or hear. Bring familiar objects from home such as a favorite sweater, blanket, pillow, books, or family photos, since these can also help him maintain orientation and awareness while he is in the hospital.
Work with the hospital staff, so they will also focus on helping your husband stay oriented and aware of where he is, as much as is possible. For example, use a bulletin board or white board with the names of care-team members and the day's schedule. Hospital staff and family should talk with your husband to help him remember where he is and why. (The greater the level of dementia, the more often this should be done.) In addition, staff and/or family should engage him in cognitively stimulating activities, several times a day (e.g., discussion of current events, structured reminiscence, or word games, maybe a sing-along, whatever your husband can do).
In other words, if the doctors, nurses, and family help your husband understand where he is and what is going on, keep him mentally active during the day, help him sleep at night, and especially do whatever they can to avoid sensory overload (too much noise and confusion, too many bright lights at night), your husband has less risk of developing problems.
The National Institutes of Health has published an excellent little booklet, called "Hospitalization Plans - A Guide to Hospital Visits for Individuals with Memory Loss", which you can download for free at:
Benzodiazepines and meperidine should NOT be used for pain control after the surgery.
If at all possible, avoid the use of physical restraints, and the use of bladder catheters. Also make sure they keep an eye on post-surgery thyroid hormone levels and vitamin B12 deficiency.
Dazed I am praying for you both. Please take any respite you can get. You will not be able to rest in the CCU, If some one whats to spell you for a while, take it. Most CCU facilities offer family guest rooms if so, ask for one . that way you can lay down in the hosp w/o being in the room with him but you will be in just a few steps away. They can sedate him for a time for you to rest. Please do not fatigue yourself!! FATIGUE is our number one enemy!!!!!!!!!!!! Phyllis
You guys are wonderful!!!! Thank you so much. I've just come home while my daughter is with him. I've been up 32 hours straight. My eyes burn and my head hurts.
Last night was worse than anything I had EVER expected even after reading what so many of you go through. He was restless, pulling at the tubes, trying to get up when he was supposed to lie still for 8 hours, and asking why we were staying down in that hole when we had a nice home with queen bed...then he would think he was home. We were right across from the nurses station and he kept asking who that was in our kitchen. Just as soon as I would explain something, he would immediately ask again. Some have said here that the reason button is broken and can't be fixed. I FOUND OUT LAST NIGHT WHAT YOU MEAN! He pulled his oxygen off and would not wear it. He pulled his IV out, threw it on the floor and was bleeding all over himself and the bed. He said he couldn't pee in the bottle and kept trying to get up. i couldn't make him understand why he couldn't get up. I would push his chest down and his legs would come up, then I would push them down and he would sit up again. They finally gave him a Restoril (I think that's the way to spell it), didn't faze him so they gave him another one around 2:00. He finally slept a little but I didn't.
He is better this morning (must have been a BAD, BAD, BAD case of sundowning last night. One of the nurses said it was caused by the morphine Our daughter is there with him now but I want to get back before the doctor makes his aftenoon rounds. Don't want to miss talking to him. My daughter, my sister and a real close friend are taking turns helping with him so I'm going to try to get a quick nap before going back.
I feel so close to all of you and I really appreciate your caring. Sunshyne, I saw that link about how to prepare for a hospital stay in one of your other posts but didn't think about us needing it any time soon.
I remember the reaction to the morphine as if it was yesterday, instead of 12 months ago. He'd pull out the IV's, then grab the neck of his hospital gown and rip it off, lying nude in the bed. while trying get the gown back up and snapped, he'd begin to kick to get out of the foam block his leg was strapped into (he had hip replacement surgery).. I didn't have enough arms and hands to keep up. If I dozed off in the chair, and he had one of these 'events', the nurse would tell me "YOU NEED TO KEEP YOUR EYES ON HIM".. At the price we were paying, I expected them to have enough nurses to take care of him.
Dazed I am so sorry you are going through this with your husband. Change can be so disorienting to them. Your being there with him will probably help a lot.
Dazed I am so sorry you have to go through this my prayers are with both of you, take care of yourself, I have not experienced anything like this so i can`t say I know how you feel, I can only send my love, hugsssssssss
Dear Dazed, My DH had major surgery in late 2007 and spent over a month in the hospital with another 3 weeks in rehab before he came home. It was the worst experience of my life. The kept him in intensive care after a 2nd procedure because he pulled out all the tubes including the catheter and sundowned badly. He cursed at me and told me he would get even with me for doing this to him. He had a terrible reaction to the painkillers and anesthesia. He went from early mild AD to full blown stage 3-5 and sometimes late stage. I have found it's not one stage all the time and varies as we speak day by day and sometimes moment by moment. The surgery was the cause of the bad decline. The wife of another patient sharing his room took me aside and warned me that it would take a long time for him to improve and that he probably would not ever be the same as he was before the surgery. At the time I thought, well she means well but I know better. Well, she couldn't have been more correct. He has never come back to the state he was in although he got better at home after about 6 months. Yes, it took that long for the hallucinations and anger to calm down. What I learned though is that: 1. I will never put him through major surgery again - I feel guilty but I have come to the conclusion that we all have to die of something. 2. I would have taken the time while he was in the hospital to get some R&R for myself instead of running right to the hospital/home to see him before and after work and all day on weekends. Not only doesn't he remember my devotion, he doesn't remember being in the hospital or rehab home.
Do yourself a favor, go home don't sleep there and get yourself some rest. He will ask for you (my DH would ask for me 2 minutes after I went home according to the sitter who was there to keep him from pulling out stuff) but he won't remember if you visit or don't. Just go when you feel better. It really doesn't matter to them as they don't remember that you are running yourself ragged.
I learned all this the hard way. Now DH is at home and I have a live-in caregiver to be here when I go to work and he works when I am at home but at least I have another human being who understands how very hard this job is. I pray for the inevitable.
Maggieroni, ...are you "me"???? I just read your note and SWEAR!!! I wrote it myself. Word for word!!! with not a single change. EXCEPT for the last paragraph. I do not go to work and do not have a live-in caregiver.
MY DH fell, broke his hip, his foot and leg was pointed sideways. The surgery "choice" was out of my control...when the EMS took him to the hospital, everyone else took over and it was pure HELL. I didn't want him to be in the hospital they took him to, but the others were on divert, none of the doctors or nurses were born in the USA, I hated everything...and HE hated me for the next five weeks. (sundowning). He demanded I be there all the time, and I tried to be - walking around like a zombie. Later, he doesn't even recall falling or ever being in the hospital.
We are all a little bit of each other. My DH's surgery was for colon cancer but I guess I could have avoided doctors so that it would not have been diagnosed. Had to stop writing for a minute as DH was screaming about me and my Mother who he says is a monster. I just got off the phone with her and he said he listened to the conversation and she was saying bad things about my father (she wasn't). I feel as if I am in a prison with a beautiful view. I can only look at it from inside. The caretaker is a handsome French male in his 50's (my age) and at least he understands and he is so nice to look at LOL.
You know, we really have to guard ourselves from going down with our lo's. We want so much to take good care of them, either becauce we love so much, or feel obligated, or think that someone else will think ill of us if we are not the best caregivers. I have felt from the very first dx that it was the end of life as I knew it. I was right! I felt really angry, depressed and resentful. What a terribly cruel sentence we are under. Caregivers are left holding the bag! We do need to give ourselves permission to take a breath of fresh air, sometime, don't we?
Thanks again to everyone for caring. Things are better now and I survived but hope I never have to go through anything like that again.
Nikki, it was so sweet of you to come back to comfort me after all you've been through. You've probably posted an update on your situation but I haven't had time to catch up reading all the posts yet. I sure hope things are better for you now.
Maggieroni and Nancy B, I don't know how you ever made it through a major surgery. I will do most anything to keep from going to the hospital with him ever again. Like Mary 75 said....we don't have to commit suicide. Of course, sometimes we have no choice.
DH was better, but not okay, after he was moved back to a room. He was still confused, didn't know where he was or why he was there and kept trying to leave. The doctors released him earlier than usual. They said it would be better for him and me if he were home. He seems pretty much himself today but doesn't remember much about being in the hospital.
Since things have settled down, I'm going to read the posts I've missed and see what's going on with everybody else and Joan, that was a beautiful thank you eCard.
MY DH had rotator cuff surgery last year, very minor stuff as an outpatient, and I promised myself then, never again. He's 85.... and like you said, everybody has to die of something.
Chris, my DH is also 85 (I'm 69). He has a torn rotator cuff and one Dr. suggested surgery. I said no. Of course, then I started second-guessing myself. Now, he also has some knee problems - fell a couple of times - and sometimes just twists his knee. But, I have determined NO SURGERY.
I agree with Vicki - NO SURGERY. My wife has a torn rotator cuff. The shoulder specialist, who replaced my shoulder 2 years ago, agreed that we would not do anything. Every once in a while she will complain about pain in her arm. I remind her that she has a torn rotator cuff and she says "OK" and promptly forgets about it.